National Observatory of Unexpected Infant Deaths

Sudden infant death (SIDS) is defined as “a sudden death in a child under 1 year of age that could not have been predicted by in the child’s known medical history could have predicted it,” whereas “sudden infant death (SID)” is the death of an infant under 1 year of age that cannot be explained by the clinical history or by postmortem investigations; in France, the Haute Autorité de Santé (HAS) has set the upper age limit at 2 years. In 2007, the HAS published recommendations for the management of SIDS intended for the 30 “SIDS” reference centers; it described the diagnostic procedures to be implemented, which, following an investigation by the French Institute for Public Health Surveillance in 2009, were found to be followed very inconsistently. Since then, no further data has been published in France, and this condition has been the subject of very little research, even though it still affects 300 to 400 infants per year, 50 to 70% of whom remain unexplained deaths. It is thus the leading cause of death among infants aged 1 month to 1 year in France.
The objective of this project is to establish a French National Observatory on Minor Injuries (OMIN) with three main goals: 1) to obtain accurate epidemiological data on this condition, 2) to identify its determinants, and 3) to describe its management in French referral centers. In the medium term, these figures will enable the development of clear and up-to-date prevention messages for the general public and healthcare professionals. Based on these figures, hypotheses for clinical and basic research can also be formulated and serve as the rationale for studies drawing on the diversity of data collected through the registry.
This registry includes all children under the age of 2 admitted for MIN at French referral centers. A wide range of clinical, biological, radiological, and pathological data is collected in an online observation log. Biological samples for a biobank are also collected following signed parental consent. All of this data will be analyzed under the responsibility of the OMIN Scientific Committee to ensure the best possible scientific use of the information. Environmental conditions at the time of death are systematically reported (sleeping position, bedding, smoking, etc.). Access to these patients’ DNA will also enable genetic research to test the potential predisposing role of certain genes. The consequences of pre- or postnatal exposure to certain nutrients or chemical, biological, or pharmaceutical toxins can be precisely characterized by cross-referencing data recorded by the observatory with that of the National Health Data System (SNDS).
Whether in France or internationally, there is an urgent need to collect epidemiological, clinical, environmental, biological, and health-related data on NCDs. We are proposing here an original and unique project in this field. This registry, and the analysis of the data it contains, constitutes an essential starting point for the development and evaluation of future, more effective information and prevention campaigns in the field of NCDs. By simultaneously providing a wide variety of research data, this registry will also facilitate cutting-edge scientific research based on evidence-based hypotheses, leading to the discovery of original findings in the field of NCDs.